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AUTHENTICALLY BOLD: REBECCA

BETTER, NOT BITTER

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Life After Cancer

Before My Eyes (My Life Flashed)

Before my eyes, last week, my life flashed in front of me. The anxiety that permeated my very being is different than the scare I felt yesterday, when a giant extension ladder fell off the top of the box truck in front of me on the highway. Sure, my heart catapulted upwards into my throat providing an instant gagging feeling and surge of adrenaline as my mind processed the speed of the escaped ladder careening towards my vehicle at least sixty miles per hour or more. As I swerved to avoid the now skidding trajectory, I thanked my guardian angel for allowing me the sense to have at least four to five car lengths between my car and this truck. Scary? Yes. Was I more freaked out with my medical incident of last week? You bet I was.

What happened last week, you ask? I thought I may have cancer again. My life literally flashed before my eyes and the fear of my children and husband growing up without their Momma and wife became surreal.

People assume because I remain in remission from my cancer, that all is well – including me. Heck, that girl is six years out from finishing her treatments…..why is she *still* talking about her cancer? Another friend innocently remarked, “Well, you hit that five year mark, why would you have cancer again?”

Recently, in the past year, I finally graduated to what I call the “big girl” schedule for my oncology follow ups – I only have to go annually now. Yes! Once a year visits to ensure my health remains solid going forward versus the every three month schedule I was on for five years. As much as I wear these oncology graduation milestones as a badge of KickAss, there is a little piece of me that has a heightened sense of anxiety that I only see my miracle workers once a year. A year is a VERY long time in Cancerland.

Last week, I confidently announced that I was going to walk into my oncology visit for my first annual checkup in my typical badass style. I was going to give love to my beloved doctors and be on my way in a half hour or less. After all, I have been working out at least three to four times a week and my nutrition has never been better. I finally have my joint pain under control, whether it is from the remnants of my chemotherapy collateral damage or actually from the rheumatoid arthritis. It has been several years since I have felt this good.

BOOM. CRASH. SREEECCCCH.

The sounds of my world coming to a skidding halt after I pointed out what I thought was a little nothing lump on the back of my neck.

On sight, my medical oncologist believed it to be clinically benign, but in Cancerland everything has to be proven otherwise…meaning a biopsy has to be done to ensure that a strange lump is non-cancerous. In triple negative breast Cancerland, I have recently learned that all bets are off – this disease is a beast in and of itself and everything, I mean everything, must be ruled out for cancer regardless of how much time has elapsed since treatment. Oy.

My doctor said she would schedule a fine needle biopsy for me and we would get it done. Fine. I was calm and collected. No big deal. I remain healthy, I thought to myself. Moments later, my doctor came in and announced that pathology was on their way over within fifteen minutes. Cool.   Let’s just get this done today.

The pathologist walked in and promptly asked if she could perform the biopsy with no lidocaine, as it causes the area to swell and make it harder to obtain a sample. Sure. I have had three kids with no pain meds, what’s a little needle to the back of my neck. Eek.

After jabbing the needle around the lump in my neck, the pathologist seemed slightly frustrated. The lump was hard and dense, not allowing her to get any tissue sample to review under the microscope. Did I mind if she tried again? Sure. The latest images of The Walking Dead entered my mind again as I let this sweet, petite woman jab yet a second needle around the back of my neck. Thoughts permeated my brain like: “Is she close to my jugular?” “Boy, I have been hanging around the gross kids and their stupid movies too long now!” “Oy, what the hell….why is this lump hard and what does this mean?”

The pathologist was not successful in obtaining a tissue sample from the second biopsy. Two neck stabbings down and no results on what this thing was in my neck. I kept my cool. Previous fire drills (aka medical scares) have allowed me to try to remain calm and collected until my medical team gives me a reason to be otherwise. (Okay, my bowels were starting to gurgle!)

My medical oncologist returned and said we need to figure out how we will biopsy the lump so we can know exactly what it is. After she left the room again for a brief period of time, she returned but this time with my beloved surgical oncologist a step behind her.

“Ohhhh, look who I happened to find strolling down the halls!” She exclaimed. The partially retired Chief of Surgical Oncology, two steps behind my doctor; the man who helped to save not only my life, but the life of my unborn child. After I jumped up to give my beloved doctor a hug, I then took pause……they’ve brought the big guns in. Holy poop. I started to debate myself: Dr. Q and I have a special bond, is he here because he loves me and wants to be sure I am okay? Dr. Q is top notch and knows his way around Cancerland….did my other doctor bring him in because…..well, you know……my heart-rate quickened.

Long story later, the big guy decided I needed a punch biopsy and right then and there. He would do it himself, in fact. As relieved as I was to have my savior there and to do the procedure himself, my nerves were on high alert. In fact, during the biopsy itself, I had what I consider my first panic attack. I nearly stopped the biopsy because my heart was pounding OUT OF MY CHEST. If I ever felt like I was having a heart attack, it was at this very moment when my doctor was carving a hole into my neck.

After the punch needle biopsy, my doctor sat down and sighed. With that sigh, he shared with me that triple negative breast cancer can metastasize to the skin. Wait, what? What the what, what? I fiddled with my hearing aid to be sure I heard him correctly.

Post treatment I have been coping with the fear of a recurrence; after all, triple negative breast cancers usually come back in the liver, lungs, brain, bones…….but the skin? That was a new one for me. A quick jaunt to my Triple Negative Breast Cancer forum on Facebook and the question posed was met with countless women who have had skin metastases from all over the world, including those with neck nodules. Holy crap. I quickly jumped off the internet for a bit as it is not the most reassuring place for someone who thinks they may have cancer.

Fortunately, for me, I have some of the best care in the world and despite the fact that my life flashed before my eyes while waiting for results, I got the call from the Big Man himself and heard the magical words every cancer survivor longs to hear: your tumor was non-cancerous. Phew. Phew. Phew.

Despite being six years out from treatment and feeling as healthy as I have been in a very long time, the journey through Cancerland is never quite done. Despite my risks of recurrence going down significantly after five years post-treatment, there is still a risk of recurrence of my disease. I will carry that with me for some time forward.

The thoughts that I am beyond my cancer were resurfaced last week and the feelings made me very vulnerable. Wait, I am the advocate now! I help mentor women through their breast cancer! I am sooooo done with my cancer.

Eff. I had a bit of a reality check last week. Any thoughts I had of moving on from the pink world were firmly re-implanted in my very core. Despite the fear and the vulnerability, I do hope that my experiences shared will alleviate the thoughts of another who is going through the same thing. In the meantime, I will press on and continue to make healthier choices for me and my family. There’s way too much life to live before it flashes before my eyes.

2014-10-21 13.22.21

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Crossroads

(Photo courtesy Huffington Post)
(Photo courtesy Huffington Post)

Have you ever hit a time in your life where you felt like you were approaching or at a crossroads? The intersection of complacency and transformation, yet, you are unsure which direction to take. What do you do?

Being the adventurous “traveler” that I am I have found myself at this junction several times over; particularly in the past twenty years. Often times, I blame my Type-A personality, my need to achieve style, my *Can’tSitStillForAMoment* character trait for circling back around to said intersection of confusion.

confused

My arrival at this jointed station is always – always – greeted by the little Angel Rebecca and Devil Rebecca on each respective shoulder. Alas, says the Angel….what’s wrong with a little complacency? From a high level perspective, your life is pretty darn good at the moment….what needs to change? Enjoy the ride! STFU, says the Devil (she can be a terse bitch), why would you ever settle for what is? Life is too short, keep moving, keep changing, and certainly do not ever think for one moment that life is meant to coast.

angel devil

Who sets the pace of the journey we take called life? We do, of course. For some, the ride may be slower, less bumpy and pretty consistently wandered without much fanfare or ado. For others, like me, the ride may be like Goliath the roller coaster: ups and downs, fast and slow, exciting and scary – consistently changing and somewhat unpredictable.

For example, there are people who are perfect happy with the same job – year after year after year. Or there are folks who complacently live within the boundary lines of their home town, and contentedly so – not missing any happenings in the next city over or even nearby in Boston. Is there anything wrong with these satisfied gentlefolk who start their lives on a straight tangent and continue that way throughout their lifetime without any crossroads? Of course, not. Is it a simpler way of living, an easier life? I do not know. Let’s ask them!

What about people like myself, who stream along but when things seem stagnant for an undetermined amount of time, we feel the need to shake it up a bit? Why settle? Why ride straight when there’s that turn here, this turn there, whoaaaa – lookie that curve ahead………..right?

what to do

In addition to my *Can’tSitStillForAMoment* trait, I fear complacency. I strive for the need to be a better person than I was yesterday. New opportunities present additional lessons to improve upon myself: professionally and personally. Right?

Having had cancer and the typical cliché “awakening” that comes with surviving a potential death trip, I am more hyper-vigilant about ensuring I am living my life to the fullest and I wonder if that is why I come to more crossroads than ever before. I also believe this is why I struggle with knowing when it’s “okay” to ride the complacency train for a bit. You know, maybe I do not need to turn off at this junction and it is okay for me to continue straight for a bit. The nagging feeling of needing change is not one that *needs* to be acted upon at every junction.  My kneejerk reaction is to change my course, particularly when things are not going as I planned or envisioned.

right

My role at my current job is somewhat undefined, yet there is growth potential down the line when I am more ready and find it easier to balance motherhood and career (all while not jeopardizing my health). Much of who I am as a person is defined by my work, so the need to keep striving in my employment is compelling. Yet, I am *okay* with what my current role is because my children need me and my years with them are limited. My flexible work schedule also allows me gym time, which is becoming more and more important and compelling a factor in my future. Perhaps that’s a to-be-determined crossroad in and of itself in my constant scrutiny of living my life to its fullest? Ah, time will tell.

My role in charity and non-profits is certainly at a junction. Somehow, if the bills would pay themselves, I would thrust myself into the world of charity even more so than my current over-giving personality allows. What is my current role to be exact? Sure, I mentor cancer patients and help them advocate for themselves on a weekly basis. With my time being constrained by other responsibilities, the time I afford to charity and my favorite non-profits must be delegated wisely. Do I push forward with the ones I am currently associated, despite on-going challenges or do I take a left turn? Ah, time will tell.

Even with this particular blog, there are many detours and intersections of direction offered. Do we go straight? Do we turn left? Do we turn right? What direction do we go? Each turn we take navigates a different walk of life; some choices may be better for us and others may be entirely wrong. The pace in which we guide ourselves is only something that each and every one of us may determine – and it cannot be compared to those around us. Coasting down the straight away may feel weird to some of us, but sometimes, that is the answer as well.  Complacency has a place, at times, right?  Wrong?

complacency

Questions for YOU:

What are some of your crossroads? What decision do you make? Are you constantly evolving and changing direction? Or do you prefer the consistency of the straight away ahead?

 

 

collateral damage

Unintended damage, injuries, or deaths caused by an action, especially unintended civilian casualties caused by a military operation.

Source: The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2009. Published by Houghton Mifflin Company. All rights reserved.

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Unintended damage caused by a war, perhaps a war against breast cancer in your very own body resulting in collateral damage. The impairments are very real and often reside behind the brave, smiling faces you encounter in a survivor. Despite asking a breast cancer warrior if she’s recovered and well after months of toxic treatments and debilitating surgeries, she is still suffering on a regular basis. How, you ask?

Often times you will not hear about the painful and balance compromising neuropathies in her feet. She hides the stumbling gait: the excruciating pain upon waking, trying to walk like a forty year old and not a ninety year old, from everyone except her husband. Yes, you did see her trip up those steps and hear her joke about her awful clumsiness; however, that smile hides the frustration in the numb feet that caught the lip of the granite and nearly caused a full on face plant, or worse, scraped hands that have braced many a fall.

Nor will she elaborate on the difficulties she faces in buttoning her young daughter’s sweater or fumbling and trying to tie the little shoelaces. The often- times illegible handwriting to the poor teachers in a school note, or the misspelled texts stem from stumpy finger tips that aim but do not always hit on target, are a regular routine event these days, one she just shakes off as a new “normal” post treatment.

Words do not come easy, surprisingly, even for the most motor-mouthed of them all. Regular words feel as if they are on the tip of her tongue, but are nowhere to be found in the circuitry of brainwaves. Disappointment and disgust enter as she tries, she blunders, and she finds a somewhat less-fitting replacement word to continue on in dialogue and unbroken conversation; followed with nervous laughter to disguise the aforementioned disappointment. New words are created as the synapses misfire between mouth and brain creating a weird, and often times hilarious, fusion of two similar words that spurt out simultaneously. Memory is far from what it was pre-treatment, while well-intentioned jokes about age from her spouse are smiled at, a sadness sometimes sneaks in as she *still* tries to get accustomed to the new normal, even five years out from completion of treatment.

Nagging joint pain continues to crash the neuropathy party in her body: a residual daily souvenir of the poison cocktails that surged through her blood vessels systemically; the sole mission of chemotherapy to seek and destroy those cancer cells that formed a mini-brigade against your immune system. The trudge against the very cells trying to mutate and possibly kill her, instead leaves her with a significant amount of collateral damage. While the surgeries may have been successful, the skilled surgeons’ knives left scar tissue and disrupted lymphatic flow – highways re-routed and blocked, further adding to swollen arms and hands as lymph fluid has nowhere else to now go. She does not complain about compression sleeves or pumping, after all she is alive and wakes each day grateful for another day of memories, even if they are foggy.

Phantom pains surface every so often, from breast tissue that is no longer there perhaps, causing her to grimace through the smile at the soccer field because she wants to grab her breast in pain, but knows it is inappropriate in a field full of tween boys. Radiated tissue is harder than non-radiated tissue, a reminder she experiences as she shifts from her right side in bed, to her left side instead and back again because it is too uncomfortable to lay upon that previously scorched side.

breast pain

Chemo weight is nearly impossible to remove, despite 4,552,854 burpees done each week or marathons run. Depression tries to overtake her brain with the weight frustrations, but she smiles again knowing she is alive and the continued efforts to perfect said burpees helps her health in other ways despite the flabalanche that surrounds her middle. Strength may be defined in her life, not only by the size of her deadlift, but instead by knowing she faces the ongoing collateral damage with every ounce of muster she may gather.

Bathing suits are anxiety provoking to most women, but add large surgical scars and uneven, lopsided breasts, and she has to summon the courage to find a flattering suit – one that covers the Frankestein-like marks upon her chest, the radiation tattoos, and helps to adjust the boobs from not being overly stared at for the discrepancy in size. She may want to wear a sign that warns the general public about the scars and misshapen body parts, but she quietly smiles and builds sandcastles anyway.

Despite her unconditionally loving spouse, she may still cover up and hide when he walks unannounced into the bathroom as she exits the shower. She cannot help but wonder what goes through his mind: will he notice the significant different texture in each breast? Will he be turned off by the drastic size difference? Wait, that won’t bother him as much as the anchor-scars that surround each breasts or the rippling or pulling skin from deeply buried scar tissue within? She will then escalate into additional worrisome thoughts: will he be freaked out by the hot flashes and the night sweats? Will he find her early morning hobbling eerily reminiscent of her parents’ old-age disabilities? The collateral damage finds its way into her personal relationships, as if to add insult to injury.

Everyone seems to consider cancer survivors are well after they have beaten their disease, or rather have remained in remission or have no evidence of disease. Many people are unaware of the residual side effects that remain in the weeks, months and years after treatment has long ended. Cancer survivors are told that many of the side-effects will lessen with time or go away all together; but for many, that is not the case and the collateral damage is with them for a lifetime.

Many of us may simply be so thrilled to be alive and to remain free of the disease, we feel this is the “price to pay” for life itself. There are some of us out there that do not cope as well, and wonder if the “price to pay” was worth the daily pain, the new-found disabilities, the slack performance in previously stellar areas of our lives like work and again; the regular amounts of agony left behind when the cancer was obliterated.

The war against cancer, especially breast cancer, leaves significant impairment on the life of the person affected. Many facilities are now only just focusing on survivorship; life after breast cancer and the well-being of the patient once treatment has completed. Recovery needs to be more than follow up appointments every three months to ensure the disease remains at bay. Breast cancer patients need to be sure to continue to advocate for their quality of life post-disease, being educated on residual side-effects that are very real, and knowing what pain is normal and what options for pain management are available.

In the meantime, she may be grinning and bearing it, so give your breast cancer friend a warm and gentle hug to soften the achy joints, offer her compassion as she stumbles in the grass unexpectedly and as she fumbles around for words to add to your conversation. She is learning to live within her post-war environment chock full of collateral damage, despite wearing her best outward smile.

In the meantime, breast cancer survivors are encouraged to participate in the Dr. Susan Love Research Foundations studies – more information may be found here: The Collateral Damage Project

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